APPENDIX: Interview Guide

We want to understand who bears the various responsibilities involved in caring for terminally ill patients in the (primary care) setting in which you work. To that end, I’d like you to talk with me and with each other about some specific aspects of the treatment of your terminally ill patients. This is a series of general questions, but certainly you can better answer them by recalling and discussing a particular case or cases that come to your mind—especially if those patients’ cases are fairly representative of procedures of palliative care in your setting.

  1. With regards to your patients who died in the last year, who in your practice carried the major responsibility for―
  2. Treating the patient’s disease?
  3. Treating his or her physical symptoms related to the terminal diagnosis or its treatment? (e.g., pain, nausea, vomiting, lack of appetite, fatigue)
  4. Treating his or her psychological symptoms related to the terminal diagnosis or its treatment? (e.g., anxiety, depression, grief)
  5. Breaking the bad news to the patient and his or her family when the time arose?
  6. Arranging for social services or hospice as the patient’s illness progressed?
  7. Making sure that the patient completed advance directives?
  8. Asking about spiritual issues or arranging for pastoral support?
  1. How does hospice fit into this picture?
  2. Who arranges for hospice?
  3. What are you looking for in referring a patient to hospice?
  4. Do you continue to follow up with your patient after s/he is referred to hospice? Why or why not?
  1. Given all the things we’ve been discussing, I’m curious to hear your opinions about how your current system is working. If you could, what changes might you make in your current practices and procedures that would allow you to take better care of your dying patients?

TABLE: Characteristics of study sites

Site Number / Specialty* / Location / Practice Type / Patient Population / No. Focus Groups / No. Participants by Role**
/ GIM / Suburban / Multispecialty group; academically affiliated; hospital based / Poor, primarily white, medically complex / 3 / 9 PCP
3 staff
/ FM / Rural / Academically affiliated; community based / Poor, primarily white, medically complex / 2 / 3 PCP
3 staff
/ GIM / Suburban / Multispecialty group; academically affiliated; community based / Middle class, primarily white / 2 / 4 PCP
3 staff
/ FM / Suburban / Multispecialty group; academically affiliated; community based / Middle class, primarily white / 2 / 4 PCP
3 staff
/ GIM / Suburban / Community based; small private practice / Racially and economically diverse / 3 / 3 PCP
5 staff
/ GIM / Rural / Multispecialty group; academically affiliated; community based / Poor, primarily white, medically complex / 2 / 3 PCP
3 staff
/ GIM / Urban / Multispecialty group; hospital based / Racially & economically diverse / 2 / 2 PCP
2 staff

* Note: GIM = general internal medicine, FM= family medicine.

** Note: PCP = primary care provider (physician, nurse practitioner), staff = support staff (registered nurse, licensed practicing nurse, or medical assistant).